March 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Wandering Lost in WebWhispers News & Events
Voice Points Lisa Proper,MS-CCC-SLP Swallowing Exercise Education-Med
Guest Columnist John G. Knox, AUD, CCC-A Meds May Cause Hearing Loss Education-Med
WebWhispers Columnist Mike Burton From Me To You-Part 3 Experience
Between Friends Donna McGary Storytelling Commentary
Practically Speaking Elizabeth Finchem The Joy Of Singing-Again Education
A Scottish Accent Donna McGary Missing Rosalie Tribute
Voice Of An Artist Avraham Eilat The Day (Or Night) I Saw God Art
New Members Listing Welcome News & Events

 

 

 

 

Wandering Lost in WebWhispers


I have been trying to find a way to explain to our newbies who are not familiar with computers, where we are and how to get around to the different areas to see our information or find people to help. Let's see if non-computer language helps.

WEBSITE: When you come to the website, http://webwhispers.org/, it is like visiting the heart of a small town. This is the home base...main street. Through the red horizontal menu, you can proceed to the Library where you can look up, read, and educate yourself on lots of subjects pertaining to us. You can look under Activities to see what plans the group might have for the yearly dinner or the WW Cruise. You can go to Services to see what is offered to our citizens in the way of scholarships, brochures to spread the word or go to Donations. Look at the Suppliers. Contact Us will show you who the volunteers are. OR, you, as a WW Member can go to the exclusive area where, under password, you will find several rosters of membership. Look for Members Area, upper right of the home page. Like many small towns with a newspaper, we have newsletters with articles of interest. See lower right.

FORUM/CHAT: This is the Community Center in our small town. It is the place to meet and chat or leave messages for others on a bulletin board. It is not in the same building (different site but we 'link' to it). We host this Forum using a part of the site formed by Delphi Forums, which has thousands of separate forums, most open to the public. Ours is not. It is for our members only. Delphi has:

  • 4 million registered members
  • More than 8,000 active Forums
  • 100,000 new messages each day

and we would lose our privacy and closeness with an open door. So we are a private forum. However, once you have joined Delphi to come to our place, you are free to visit many other forums where they talk about anything they want to, most specialize in topics: cooking, sports, politics, health, etc. There is a list.

THE [WebW] EMAIL LIST: Many new members refer to "reading what was on the site this morning", meaning they read the emails that came to their own mailbox. The subject line of that Email will start with [WebW] and will be Plain Text with no attachments Compare this delivery to the post office. Emails may be delivered to your post office box, where you go get them when you want but most of us have email delivered right to our computer and it is stored on our computers, as in being delivered by our postman and left in your mailbox. To participate in this exchange of emails, there is an address where we all send our emails: webwhispers@mail-list.com is a computer that will send an approved email to everyone who is signed on to our list.

You must give your email an appropriate subject, write your comment, and give your name. In the Members Area there are rules ...but a simple set were sent to you with the Welcome Letter from WW. If you are replying to one already written, 'reply to all' will bring up an email already addressed to both author and the WW List. DO NOT leave the message to which you are replying on your email. Highlight and delete all or, at least, all the excess. You can use a line or two of it, if you wish.

Hope that keeps our new folks from getting lost in Cyber Space!


Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S

 

(LisaProper@gmail.com)                      [© 2009 Lisa Proper]

 


Swallowing Exercises for Radiation Patients

Lisa M. Proper, MS CCC-SLP; BC-NCD; BRS-S

 

Last year I wrote a three part article on the role of the Speech Pathologist with patients undergoing radiation treatment to the head and neck. Many of you said you found the series useful but had wanted more information regarding the specific exercises that were incorporated into our program. (Please refer to the three part series should you desire more background information as I will not repeat that information in this article.)

There were reasons why I neglected to add the exercises to the article. The first of those is that I don't like "cookbook" approaches to therapy and I did not want to encourage such actions by providing specific exercises. Another reason is due to VoicePoints articles being read by more than just professionals and I do not want patients doing these exercises on their own without professional guidance. However, since I had ongoing requests for this information, I decided the benefits for those who would be helped should out weigh any possible inappropriate use.

I will remind the Speech Pathologists that the exercises that will be presented are by no means a complete list of appropriate exercises and that ALL exercises are not meant for every patient. Even the core exercises in the basic program that were given for prophylactic purposes to patients with no oral and pharyngeal complaints were tailored to each patient with regards to their tumor site and radiation beam course. If you are patient, it is important that you NOT take on these exercises without professional assistance, while many of them are "general stretching" exercise; many others are not and may cause adverse effects. The other cautionary note with this protocol of exercise is that the research was not completed before I left the facility were I started this program and, to my knowledge, the research protocol is no longer being monitored. Therefore, I cannot tell you this program is strictly evidenced based. However, I can tell you that the results up to the time that I left were extremely promising not only in the data collected but in overall clinical observations. Physicians in both Radiation Oncology and Otolaryngology commented on how they appeared to be seeing significantly less patients with pharyngo-esophageal segment problems as well as overall dysphagia. Patients themselves would comment on the assistance the exercises provided them as they experienced more difficulty when they would stop doing the exercises. What a great motivator this was! The other good news about these exercises is they are not original and many of them have research evidence behind them for use to improve, but not as prophylactic exercises. The original program was geared to swallowing and so is the group of exercises. However, as you will see, many also will have benefits to the muscles of speech as well.

The "core" exercises provided to all patients undergoing head and neck radiation include a group of exercises for tongue base strength; lingual range of motion, laryngeal/pharyngeal motion; and UES opening. These seven exercises included the use of the Yawn exercise; Gargle exercise; a Hard Effortful Swallow; the Tongue Hold or Masako exercise; the Shaker exercise protocol, the Super Supraglottic Swallow exercise and Circular Lingual Range of Motion exercises. As you can see by these exercises, you would definitely not give these to all patients. However, when this situation occurred, a substitute exercise or a modification of the exercise was attempted. In addition to these exercises, most patients received range of motion and/or strength/resistance exercises based on the site of their tumor and the radiation field. As I stated in the previous article, the exercise repetitions and frequencies were given based on the research results for each exercise. If this information was available in the literature, it will be denoted in the specific information given for each exercise. The patient was directly trained in each exercise by a Speech Pathologist. This training included verbal and graphic description of the exercises; demonstration of the exercise followed by patient trial. The patient was also given the physiological rationale for each exercise. The specifics for each exercise are as follows:

Yawn: The patient is asked to establish the "height" of the yawn and hold this yawn position for 3-5 seconds. If there was no pain involved in yawning, the patient was told to hold for 5 seconds and not given the option of three seconds. The originally reported exercise protocol was to have the patient perform this 5 times each, 5 times a day, this same frequency was utilized. The Yawn exercise not only improves tongue base strength but also works on mandibular range of motion; both major areas of emphasis in the radiation protocol. The patients were also provided with the following "Tips for Yawning" as many found it difficult to spontaneously yawn: "Try to perform this exercise when you naturally yawn and when others are yawning as yawning is contagious! To make yourself yawn - Open your mouth as wide as you can and inhale a large amount of air to the back of your throat. You may need to depress the tip of your tongue into the floor of your mouth. Experiment to see what makes you yawn." It is important to remember that the patient must actually yawn and not just open the mouth as the "yawn" automatically adds the tongue base strength action to the exercise.

Gargle: The patient is asked to hold the gargle for 3-5 seconds. If there was no difficulty or aspiration risk, the patient was told to hold for 5 seconds and not given the option of three seconds. The originally reported exercise protocol utilized was to have the patient perform this 5 times each, 5 times a day for a total of 25 gargles a day. This same format was utilized. This exercise focuses on tongue base strength in a repetitive motion unlike the previous yawn exercise which was in a static motion. This exercise most likely also assists in laryngeal motion as well but we don't have any clear data to support this notion. The patients were asked to gargle utilizing plain water or the water, baking soda and/or salt combination they may had been given. The patient was encouraged to set up this exercise in the restroom and do at times to reduce interference with their daily activities. If the patient was at risk for aspiration while performing this exercise, the patient was trained in a dry gargle technique.

Hard/Effortful Swallow: This exercise has been noted to improve not only lingual and laryngeal function but pharyngeal motion as well. This exercise requires maximum speech pathology assistance to assure the patient is appropriately performing this exercise. One of the best training methods that I have found, is to have the patient place their hand on my thyroid cartilage while I perform the maneuver, this way they were able to feel not only the intensity of the swallow but the hold of the laryngeal elevation as well. The frequency utilized for this was the same as the previous exercises. However, the patient was also encouraged to do this every time they swallowed their saliva, which would negate the necessity of a formal "sit-down" exercise period for this particular exercise. If the patient had no swallowing problems, they may have been trained in performing this every time they took small sips of water.

Tongue Hold/Masako Exercise: This exercise is known to improve tongue base strength; however, I believe that future research will show even more benefits to the hyolaryngeal complex. This exercise is one of the harder to perform and therefore, the speech pathologist must be diligent in their training of this exercise. This exercise is performed by having the patient protrude the tongue out of the mouth and while keeping the tongue out of the mouth, the patient is asked to complete swallow. It is extremely important that the speech pathologist be absolutely certain that the patient is performing a complete swallow in order to gain the benefits from this exercise. In my experience, this is one of the most underused exercises given by Speech Pathologists. It is not that the exercise is not given; it is that the frequency of practice is rarely given at the research protocol level. The research protocol for this exercise is 15 repetitions, three times a day. That is 45 total each and ever day. I have found that with many patients, especially those with dry mouth or tongue base involvement, that performing this exercise 15 times in a row, may be too time consuming or just not physically possible. In these cases, I encourage my patients to decrease their repetitions at one setting and increase their frequencies of the repetitions being assured that they perform a total of 45 a day. A popular guide with this protocol was 7 repetitions, 5 times a day to correspond with the previous exercises. Several tips and suggestions were provided to the patient including the possible need to gently bite down on the tongue (for anchoring) to assist you in swallowing. The patient was also educated to the fact that the further the tongue was protruded from the mouth during the swallow, the harder, and probably more beneficial the exercise. All patients were initially instructed to perform this exercise while looking in a mirror to assure that the tongue tip is completely out of the oral cavity during the entire swallow and to be sure that the tongue tip was not sitting in the bottom lip, which is a common occurrence. If the patient was unable to master this exercise, they were trained in holding their tongue with gauze or their fingers as an initial exercise.

Shaker Exercise: This exercise is used to improve opening of the pharyngo-esophageal segment by directly influencing hyolaryngeal motion. It is extremely important that the patient utilize correct positioning while performing this exercise. Additionally, if the patient has had a radical neck dissection, it may be advantageous to engage assistance from physical therapy to assure adequate patient abilities with this exercise. While performing this exercise, the patient should lie on their back with their face looking at the ceiling. It is imperative that the shoulders remain on/touching the surface throughout the exercise. A pillow should not be used. Part one of the exercises is to flex the neck by attempting to or actually touching chin to your chest. The mouth should remain closed with a relaxed jaw. This position is to be held for 1-minute/60 seconds and the exercise is to be done 3 times total in one setting while resting one minute between each exercise. Most patients will not be able to hold this for the entire 60 seconds initially; therefore the speech pathologist will need to train the patient on how to maximize the repetitions to counteract the reduced hold time. The second part of the exercise is to repeat the previous exercise (neck flexion) without holding. This is simply having the patient touch his chin to his chest while maintaining the previous described position. This should be accomplished 30 times in one setting. However, recent literature suggests that adding two additional sets of 30 to this protocol may also be beneficial. These exercises are to be completed 3 times a day. It is suggested that patient do this exercise set before arising in the morning and again before going to sleep which would make only one time during the day that they would have to do this. This exercise is somewhat controversial in the rehabilitation to laryngectomees and should absolutely not be done by any laryngectomy that has not had this prescribed specifically to them.

Super Supraglottic Swallow: This is a widely known and published exercise. Therefore the specifics will not be published here as they are readily available in the literature. Additionally, due to the precautionary measures that need to be taken with this exercise, I believe the specifics are best left out of this article. Additionally, most of our patients did not get this exercise due to the medical status.

Lingual Range of Motion: To keep the prophylactic exercises at somewhat of a minimum, the patient is asked to simply "lick" their teeth from the very back to the very front, both inside and outside their teeth in both the maxillary and mandibular planes, several times a day. No specific frequency is given.

If the patient is at risk for trismus usually due to tongue base involvement, the patient is also given several additional exercises for mandibular range of motion and strength via resistance exercises. I believe this part of the program demonstrated some of the greatest prophylactic gains. Jaw range of motion is more than opening the mouth. And, yes we have already covered mandibular excursion in the yawn exercise, so we do not add another. But the patient is also given stretch exercises for jaw lateralization, jaw protrusion and jaw retraction. These are given in individual motions utilizing a hold as well as via a complete circular motion made by the jaw made in both directions to assist in rotary rage of motion. Mandibular strength exercises incorporated resistance via the patient's hand to both opening and closing. These simple resistance exercises appeared to have the most gains in reducing trismus and even improving mandibular excursion if it had been reduced during radiation treatment. Jaw exercise frequencies are slightly different than the previous exercises as the patient was asked to perform all jaw exercises at a frequency of 7 Sessions per day, 7 repetitions and with a 7 second hold if the exercise calls for such a sustained posture. (As mentioned in the previous articles this was chosen to mimic the Therabite protocols as these have demonstrated clinically noted success rates with these frequency levels.. Additionally, one is highly encouraged to read the third article in that series for more information regarding mandibular excursion evaluation which will assist in treatment management)

As I previously mentioned, not all patients were able to be given all of the above exercises due to a variety of reasons. Additional exercises that may have been given were as follows: "Hawk" exercise; Swallow Hard exercise; Showa maneuver; Shaker with resistance; Mendelsohn Maneuver; specific laryngeal elevation exercises or the Reiman Maneuver. Most all of these are widely published, however, should you desire the specific patient directions the protocol used, please feel free to email me and I will be happy to provide you with this information or any other information regarding this article. And of course, this list is not exhaustive.

With all the exercises, the patients are to be instructed that exercises should be performed without pain. In other words, the patients should not experience exercise induced pain. They are educated to stretch or resist to the point of strain, just never to the point of pain. (Just before that point is good!) It must be stressed that this or any exercise program given by a speech pathologist is NOT a "no pain-no gain" program. Many times one must be reminded that they are not dealing with the muscular tissue of the young or an athlete! On the other hand, if the patient is experiencing radiation induced pain, exercise needs to continue. This may be assisted with the use of a numbing mouthwash used prior to exercised. (With the exception of any direct swallowing exercises, of course). The patient must be highly encouraged to persevere with the exercises through the radiation induced pain (not exercise induced pain) and complete all exercises as prescribed. However, if this is not possible, it is highly stressed to the patients to do a minimum of at least one set of all their exercises even when experiencing significant radiation complaints.

Please send any questions or comments directly to me at lisaproper@gmail.com

 


 

 

 

 

Ototoxic Medications May Cause Hearing Loss

John G. Knox, AuD, CCC-A
Audiologist
Koss Hearing & Balance Center
Department of Otolaryngology & Communication Sciences
Medical College of Wisconsin


A drug is a chemical used for a therapeutic effect. Unfortunately, some drugs may have toxic effects as well as therapeutic effects. A toxic effect of some therapeutic drugs includes ototoxicity or damage to the ear.


Ototoxic drugs


A number of different drugs may cause hearing loss, tinnitus and balance disorders. Some intravenous antibiotics and antineoplastic drugs used to treat certain cancers are known to cause sensorineural hearing loss and tinnitus.


Antibiotics that may cause ototoxicity are:

  • amikacin (Amikin)
  • streptomycin
  • neomycin
  • gentamicin (Garamycin)
  • erythromycin (E-Mycin, Eryc)
  • kanamycin (Kantrex)
  • tobramycin (Nebcin)
  • netilmycin (Netromycin)
  • vancomycin (Vancocin)

 

The most common antineoplastic drugs known to cause ototoxicity are:

  • cisplatin (Platinol AQ)
  • carboplatin

 

Description:


Ototoxicity is drug or chemical induced damage to the inner ear. The inner ear contains both the hearing mechanism and the vestibulocochlear nerve, the nerve that sends hearing and balance information to the brain. Because of this, ototoxic drugs may cause hearing loss and loss of balance.


The extent of ototoxicity varies with the drug, the dose, and other conditions. In some cases, there can be full recovery after the drug has been discontinued. However, in other cases, the damage is irreversible and can be limited or wide spread. If hearing loss occurs, it is always sensorineural and usually equally effects both ears. Sensorineural hearing loss is caused by damage to the sensory hair cells of the inner ear. Most often, the hearing loss occurs in the high frequency range, making it difficult to hear high pitched musical notes and high pitched speech sounds like /s/, /th/ /f/ and /sh/. In extreme cases, hearing loss can be permanent or result in complete deafness.


Ototoxicity often goes undiagnosed because hearing loss may be slight or restricted to the upper range of higher frequencies. Patients may notice a change in their hearing, but it may not be significant enough to report. In other cases, hearing loss may be quite significant and very noticeable. Ototoxic damage may also cause tinnitus or ringing in the ears. Depending on the loudness and severity, tinnitus can be annoying or quite debilitating.


When physicians are administering medications known to cause hearing loss, it is recommended the patient receive regular hearing tests by a certified audiologist. By monitoring hearing on a regular basis, it may be possible to discontinue the medication, or reduce the dose so no further damage is done. If permanent hearing loss occurs, the audiologist can counsel the patient about hearing loss and possible treatment strategies and alternatives to improve communication and understanding.


Loss of balance related to ototoxicity may be more difficult to diagnose than hearing loss. These changes may take place gradually, over time, and may be confused with the effects of the condition the drugs are meant to treat. If ototoxicity is suspected, balance tests are available, including a platform balance test, and a rotary chair. These, and other tests, determine how a patient responds to motion and changes in body position.


A number of promising therapies to prevent or reduce hearing loss caused by ototoxicity are currently being investigated. However, they are still in the research phase and are not available yet for wide clinical use or application.


Treatment


People who suffer permanent hearing loss may elect to purchase hearing aids from a qualified audiologist, or, when appropriate, receive a cochlear implant.


For those who have balance problems, physical therapy may be helpful. Physical therapists can help people with balance problems learn to rely more on vision and the sensations from muscles to achieve balance.


It also important to limit exposure to loud noise and wear hearing protection in noisy environments because prolonged exposure to loud noise can worsen the effects of ototoxic drugs.


Questions and Answers


What percentage of patients who receive Cisplatin therapy experience hearing loss?

Approximately 20% of persons who receive a standard dose of Cisplatin experience hearing loss. However, this percentage varies widely depending on the study cited and the contribution of other factors. These factors include the mode of drug administration, tumor site, age of the patient, renal (kidney) function, prior cranial irradiation, other drug interactions, noise interaction, individual susceptibility and cumulative dose. Cumulative dose is thought to contribute heavily to the level of ototoxicity.
 

How does noise exposure contribute to ototoxic hearing loss from Cisplatin therapy?


Noise exposure before, during and after Cisplatin therapy can compound the degree of hearing loss caused by ototoxicity. It is extremely important to limit the amount of noise exposure during and after the cessation of Cisplatin treatment. Hearing protection should be worn diligently in the presence of noise for at least 11-12 months after the end of Cisplatin therapy in order to avoid the synergistic effects of noise exposure and Cisplatin on the health of the inner ear.


Can heavy doses of aspirin cause hearing loss?

Yes, taking large amounts of aspirin on a regular basis can cause hearing loss and tinnitus (ringing in the ears). However, the hearing loss and tinnitus effects are temporary and reversible about 2-3 days after aspirin intake is stopped.


Can ototoxicity and hearing loss be prevented?


Otoprotective agents and drugs are currently being developed to prevent hearing loss caused by ototoxicity. However, these drugs are in the experimental, developmental stage and are currently not available for use.


Radiation can also damage the ears


Radiation treatment to the head and neck region can be damaging to the external and middle ear systems. The external (outer) and middle ear carry and transfer sound from the environment to the inner ear part of the ear. Possible radiation-induced changes to the external ear include erythema (redness), dry and moist desquamation (peeling and skin weeping), ulceration, atrophy, external ear stenosis (narrowing of the ear canal) and otitis externa (or infection).


Specific damage to the middle ear can result in conductive hearing loss, a temporary or permanent loss of hearing caused by fluid build up in the normally air filled middle ear space. The Eustachian tube connects the middle ear to an opening at the back of the throat or pharyngeal area, acting to equalize the pressure in the middle ear space. Radiation can cause swelling and blockage of the pharyngeal opening, leading to acute and/or chronic otitis media (ear infection) and middle ear fluid.


The most important factors or reasons that contribute to radiation induced damage to the ear are tumor location and the amount of radiation to the auditory structures of the ear. If the tumor is located close to the ear structures, the possibility of collateral damage from radiation is elevated. Likewise, higher levels of radiation dose increase the risk of developing damage to the auditory structures.

 

 

 

 

 

FROM ME TO YOU (Part 3)

by Mike Burton,
Middle England, UK


With thanks to the Beatles for the main title, the paragraph titles and lyrics.
The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.

 

When I’m Sixty Four (Give me your answers, fill in a form, from your point of view)

After the MRI results were known, I received a letter from my surgeon’s secretary stating that he wanted to see me again, and soon. I found the urgency of the meeting disturbing. Although no reason was given in the letter, all manner of thoughts were going through my head. This time there were no delays. Taking the same walk and sitting in the same chair as I had before, I watched the surgeon peer through his spectacles at the notes before him, turning the few pages back and forth, as if to confirm a comment on one sheet tied in with another. With thumb and forefinger of his left hand now stroking his chin and without making eye to eye contact, he started to talk to me.

“Well, Mr Burton, I have here the results of your MRI scan. There is evidence of a growth in your throat and thorax area and this needs further investigation. I want to have you in for an overnight stay with us so that I can get a better look with a camera. You will be put to sleep under general anaesthetic, so we can also use this opportunity to take a sample of the growth, which we can then send for further analysis. I will ask my secretary to make the arrangements. Have you any questions?”

I sat there stunned. For the first time in living memory, I had nothing to say, I couldn’t even look at him in the face; I only stared vacantly at the floor shaking my head from side to side.

“Ok then, Mr Burton, that’s fine. We will be in touch with you as soon as possible. Goodbye.”

I rose from my seat watching him closing my file. This would end up being one very thick one with an additional thin one by the end of my journey. He placed it in a basket to his left and simultaneously with his right hand, picked up, presumably, the next patient’s details, already placed on his desk in readiness.

I did not know what reaction to expect from Susie, but on the way home I tried to prepare myself for the worst case scenario. The trouble was, I did not know what that would be either! I parked the car in front of the garage. I couldn’t be bothered to park properly on this occasion. If the shit was to hit the fan, a quick getaway might be required. I was wound up like a coiled spring and sheepishly opened the front door. Susie was in the kitchen and seeing me come in, filled the kettle and proceeded to turn it on.

“Do you want a cup of tea, love?” “Yes please”, I replied. “I could murder one”.

I walked towards Susie. She immediately gave me a cuddle and a kiss and then turned her attentions back again to seeing to the tea. My shoulders lowered considerably. Susie poured us both a cup and we sat at the dining room table sipping the freshly made hot brew. Susie asked me how it had gone. I explained what he had said and she seemed to take everything remarkably calmly, much to my surprise.

A few days passed and Susie received a phone call from the surgeon’s secretary. He wanted me to come in for a pre-op examination and CT scan tomorrow. Being told where to go by the nurse, Susie was asked if I could report at 11am; she replied that it should not be a problem and I would be there. I was informed of this by Susie, via my mobile, and told my employers on my temporary job that I would not be in the next day and the reason why.

I did not sleep well that night, probably because of a couple of healthy glasses of scotch whiskey prior to going up to bed. Maybe that was the reason for the disturbed night, but I didn’t care, having the next day’s events on my mind. What was a pre-op examination? What was a CT scan? Susie got up and made tea and saw the boys off to school.

The time arrived for us to leave. We arrived at the hospital earlier than expected. For some unknown reason the traffic had been very light that day. I booked in.

Again, I was seen late. The nurse came out into reception, and with a booming voice announced,

“Mr. Burton, please”.

I stood up and simultaneously raised my right hand in case there was still any doubt of my existence. This nurse had the physique that a female shot-putter would envy. There would be no messing with her, I thought. As it transpired, she was gentle and most re-assuring. I began to feel more at ease almost immediately. She produced a form on which there were loads of boxes to tick, she would fire the questions, and I would reply yes or no, although mostly the latter. With the form duly completed, she took me to get weighed and on the way I took the opportunity to find out what a CT scan was. She nurse told me in some detail that it was a painless exercise that gave the doctor a posh 3D X-Ray. I knew all about X-Rays having had them before and armed with this information remained remarkably relaxed, which was most unusual for me. Having now been weighed, I returned with the nurse to the desk in readiness to leave. The nurse then dropped a bombshell. They required a blood sample! I went cold. My brow now had a sweat that had not existed10 seconds prior to this statement. The nurse started to fill out a couple of plastic covered forms that I was to take with me to the lab.

Give blood? The very funny Tony Hancock blood donor UK TV sketch came to mind. “Oh my God, you have taken nearly an armful!”

This, being one of his many funny comments in the sketch, went flashing through my mind but I found nothing to smile or laugh about it at this time.

The nurse gave me directions to the portable cabin in the hospital grounds where it was to be given; we had noticed it on the way in. My heart sank. Sod it, I thought! The portable cabin was not more than 30 yards from the main entrance, not far but opposite the mobile MRI trailer I had been to before. It was about 85 degrees outside and I felt that I needed another layer on to keep me warm. Awkwardly, we walked in and handed in the papers and sat there. In position, behind a screen, was a young nurse. She called for me. I guessed she was about ten years younger than my eldest son Raymond.

“Sit down.” she said, as if I was another piece of meat on the conveyor belt. “Relax, please,” she said, strapping a piece of material around the top half of my arm. I sat again with clenched hands and eyes tightly closed.

“This won’t hurt a bit, just a sharp scratch.” A couple of minutes passed; then I heard, “That’s it!”

I released my clenched hands and opened my eyes to find the young lady with two syringes full of my red stuff and a bit of material in place which she asked me to hold and shortly after put a piece of tape upon it to keep it in place.

“Just sit there for a while, then you can go.” she said. I arose shortly after, as instructed, and left the chair with a swagger that John Wayne would have been proud of. No trouble, I thought to myself; can’t understand what all the fuss was all about.

Still feeling pleased with myself, there was only the CT scan left on the agenda, and it would be all over for the day. We walked towards the map of the hospital located just outside the main entrance to establish where the unit was located within the hospital.

It was busy inside. Porters were taking patients around upon wheelchairs and trolleys. People were walking up and down, some looking confused. We double checked where I needed to go using the board on the wall located opposite the hospital main entrance.

“Where’s area M?” one man asked a porter. “Area M? Oh yeah mate, straight down the corridor to the end, first right then past oncology, nuclear medicine and then turn left and you will head towards area M, it’s well signposted.”

He trudged off in the general direction; I had already lost the plot. I hope he got there!

When we arrived, after checking in, I was most surprised to see that there were only a few people waiting in the CT area. There was a lady in a wheelchair, waiting with a man, who I assumed was her husband; also a chap wearing a turban who was on crutches that were parked neatly beside him, and a mother, who again I assumed, was with her teenage daughter dressed in a gown. At least this guess work was keeping my mind off of the scan itself.

Only a few minutes had passed and the teenager was called by the radiographer. She gave her mother a quick kiss on her left cheek. Mom remained seated whilst the procedure was being sorted out. Susie reached for a magazine on the table in front of her and proceeded to flick through its out of date pages, not finding much of interest. This was quickly changed for another one which proved to be of equal unimportance and it received the same table bound treatment. About a quarter of an hour had passed and the teenager appeared from the room and went to the cubicle to get changed back into her normal clothes. The radiographer reappeared and called for me rather than any of the other people, who by now had been waiting longer. I followed her in to the room.

I said, “Do I need to get changed?”

“No,” came the reply, “that will not be necessary with your scan. Just remove your glasses please. I shall only be a few of minutes with you.”

The radiographer spent a little time making sure I was lined up correctly on the couch. Once she was happy, she left to go behind a screen, telling me that she was about to start the scan and to keep as still as I could. The scan was soon over and the radiographer came back into the room and helped me down from the couch.

“That’s it, you’re finished. Your results will be sent to your doctor, who will be in touch. Goodbye.”

“Bye.” I said, upon leaving.

To be continued... NEXT MONTH... Drive my car (Working for peanuts is all very fine

 

 

 

 

 

 

Storytelling


My Dad turned 84 on February 17th and even though I wasn’t there, in Florida, to celebrate the day this year, you can bet I was thinking of him. You can’t often say it, but sometimes it is just so true; age becomes him.

One of my favorite memories is actually one of our worst fights. It was 1968 and the times they were a changin’. Dad had gone to Harvard for his EdD and come back a “liberal”. In those days, in our small, Maine, Roman Catholic mill town, that was a much misunderstood, even dirty, word. Dad was the School Superintendent and not everyone appreciated his progressive views, symbolized to many of his detractors by his new beard. Now my father was no long-haired hippie type espousing free love, although he was an adamant supporter of the Civil Rights movement; his beard was as much a fashion statement as a political one. He looked good in that beard; my mother loved it and apparently she wasn’t the only one. There was that time when he went to the high school cafeteria for his lunch and one of the cafeteria ladies came bustling around the counter to announce loudly, amidst much giggling “I just have to have a kiss with that beard”. It was a moment of levity in what was otherwise a difficult year at home and abroad.


“The Graduate” came out in 1967 but, like many other things, didn’t make it to Maine theaters until 1968. Along with the more explicit movies of the 60’s, came a rating system and “The Graduate” was an R. You were supposed to be 16 to get into an R. I was 15. All my friends were going; some of them were 16 already, one even had a driver’s license. Dad would not allow me to go- I wasn’t 16. He liked those kids so it wasn’t an attempt to steer me away from bad influences…it was all about the “rules”. Dad was more literal than liberal those days when it came to the rules, especially those concerning his daughter! I pleaded my case…I would be 16 in a few months, I was going with good kids, I should be trusted…to no avail. When it became apparent that I had lost that case, I made the quintessential adolescent barb as I prepared to stomp upstairs in great indignation, “It’s too bad you aren’t as liberal as that beard makes you think you are.” WELLLL, you have never seen a man move so fast across two rooms. He stood before me, hand upraised to strike and I was both defiant and afraid. Dad blinked and walked away. He did, however, have the last word. He wrote to the theater to complain about their lax enforcement of the rules requiring proper ID and I heard about it more than once as classmates complained that they had been turned away by the letter from “Dr. McGary” posted prominently at the ticket booth!! I hated high school.


There is another story about Dad that is equally telling and perhaps more revealing of the true character of the man. It is now 1970 and one thing the “liberal”, as I scathingly referred to him, had done, over the years, was set in place a top-notch arts and music program. If you were a high school student in southern Maine with musical talent, you needed to go to Westbrook…and so there were transfer students and some of them were pretty odd…even by my standards! One stood out, however, not just by his musical talent and irreverent attitude but by the length of his hair. The high school principal, being of the old school, was NOT impressed. He called young Tom to his office and told him to cut his hair. Young Tom respectfully declined and was sent to the superintendent’s office. Dad talked to the fellow and determined that his grades were good, his musical ability outstanding and that the length of his hair was unimportant. If the principal wanted to make an issue of it, that was his choice. He chose the principal to make decisions…let the principal decide. Tom graduated with honors, long hair intact and the principal never forgave my father.


I never learned about this until years later. By then my father and I had made our own peace. He had now taken on the role of dad to my son, something we are both forever grateful for. While he has always been stringently moral, I think Dad came to realize, over time, that the truth had many more shades of grey than he had previously supposed. He had been a good man and, I think, as he got older, he became a better man. He has become a great old man.


Age becomes him. Yes, it is true, he is a bit slower and certainly a lot deafer, but his good and honest love of family and what is right and true about life is the legacy he leaves to us all. My son, the grandson he helped raise, is about to become a father himself. That baby will be a part of the legacy of love and loyalty we all learned from my Dad.


Happy Birthday, Dad

That was then…this is now.


I started writing that “Birthday Card” thinking it might evolve into a column and decided against it because it was just too personal. Two things happened to change my mind. First, Dad wrote back and said this:
Thank you so much for a wonderful reminiscence. I have thought many times of that incident and have been ashamed each time. Indeed, I had hoped that you didn't remember it but I thank you for forgiving me. It really is a blessing after all these years to know you understand.


At the time, I thought my dad was being a bit overly sentimental; it’s an Irish thing. Then I got word that my favorite writer and dear friend, Rosalie Macrae, had unexpectedly passed away. Suddenly, I became aware that every little moment is precious….something Rosalie, I know, would appreciate.


Life is just too short, cancer or no, to hold a grudge. Sometimes old wounds run deep and unexpected. Telling old stories can heal in surprising ways. I certainly had no idea my dad felt bad about that long ago episode. I have long thought it just a great, funny family story, a snapshot from a time of innocence, in many ways. I still get a kick out of my line about his “liberal beard”. I am very glad, now, I wrote that little story down, especially since it meant so much to Dad.


I wish Rosalie could have made it to Maine last Fall, as she had planned…my dad is a great Irish story-teller in his own right…he would have loved her. I know I did.


Don’t be afraid to tell your own stories. Rosalie’s legacy is in her stories and we are all immeasurably richer for her sparkling generosity in sharing them with us. She would be the first to say “Pay it forward”. You just never can tell who it might touch and how it might help.

 

 

 

 

 

The Joy of Singing…Again

 

As a practical matter, singing has always been a part of our lives. We learned to sing Happy Birthday, Christmas Carols, hymns, theme songs, jingles, and our favorite songs. It is not unusual for a laryngectomee to assume they can no longer sing. However, there is no need to miss out on this fun, even if you can only hum the tune or whistle some of it to begin with. How is that possible? It will help if we move beyond the assumption that it’s simply not possible after having a total laryngectomy. Oh my, how those negative assumptions do keep us from trying what is possible! If only we would take time to learn how to compensate for the loss of our larynx in a new way.

The topic for this article was planted in my mind while I attended a memorial service to celebrate the passing and life of a Nu Voice Club member recently, held at the church where he was a well respected and active member for decades. His artwork was prevalent in the series of stain glass windows he had designed and built to enhance the Fellowship Hall. This service was held in there for all to celebrate his ability to let the “light” in on two side of the room; an enduring personal gift to his church, and a post laryngectomy hobby.

As moving as the service was, I was also moved, in a personal way, by the fact that two other club members sitting on either side of me in the back row did not stand, nor open a hymnal, or even try to sing along during the two hymns. One member uses TEP, and the other is an accomplished EL user. As is my habit, I automatically stood, opened the hymnal and sang the familiar hymn, all three stanzas and choruses. I was puzzled by the non-participation of my fellow laryngectomees. How were we different? If I can sing using esophageal speech, why, then, did they feel they couldn’t sing with their chosen aids?

Then I remembered those early days following laryngectomy. Eventually I learned to either mouthe or sing what I could of the words to the songs I remembered. This was better for me than weeping over what I thought I could no longer do. When I learned to use the EL the volume control was not as sensitive as the newer models are. It is appropriate to turn the volume down in a crowd, in some settings, like a restaurant, funeral, or waiting room. Does the infamous cell phone user who believes shouting will help to be heard come to mind here? As if we all need to know their business.

Since the memorial service I’ve learned that the TEP speaker still teaches music, and was a singer of note. All the more tragic that this person’s idea of what is perfection prevents any attempt to sing again even though it is entirely possible, and would improve the TEP voice used for the past eight years. There will be singing at the next club meeting. Happy Birthday will be a good start. I’ll bake the cake so we can practice!

When I left the service my first thought was that I come from a different era of total laryngectomy rehabilitation. I wasn’t left to wallow in sorrow for long. Some of my favorite memories of past IAL Annual Meetings and Voice Institutes recall all the attendees gathered for some fun at our Sing-a-longs and Fun Shows. These events were not only hilarious, but they wisely provided an opportunity for each of us to share another side of ourselves with our new and old friends. The newest laryngectomees are usually surprised to see us playing, laughing, talking while we eat, dressing up for a banquet, dancing, playing instruments, singing, and YES…we even swim there. One year we put together a chorus that sang “Row, row, row your boat”, and “Three Blind Mice” in the round. The Chorus was divided into three groups: the EL singers, the ES singers, and the Blom-Singers. Pun intended. We got a huge chuckle from the audience.

The Sing-a-longs usually were blessed with a piano player from our group, either an SLP or laryngectomee, song booklets with our favorite old tunes most of us knew by heart anyway, and a song leader with a microphone that he/she used to wander through the crowd to amplify the new voice of someone who was really belting out the song with feeling the best way they could.

Those who attended past Fun Shows will always remember Howard Moore taking requests for him to sing again his favorites, “I Left My Heart in San Francisco”, and “El Paso” with his TEP. Jewell Hoffman’s sultry version of “Crazy” with her deep and mellow ES voice brought a standing ovation. Past Fun Show Director Ron Langseth often had us singing and dancing to the music of some of our fellow laryngectomee musicians. During an old time radio show skit some of us had to whistle the “Rinso White” tune, and sing or hum other old, yet still familiar radio commercials. I thought Ron had gone a bit too far when he asked me to play Rosemary Clooney, and sing “Comma My House” without music. I agreed to “try”. I had to learn the words for all the verses and chorus. This project meant I also had to get my esophageal voice up to speed to rattle off ES at a very fast rate that was both intelligible and musical. I was relieved when our Fun Show was over, and some of the audience reported that even the rhythm came through just fine. Recently the Sing-a-Longs and Fun Shows have been tabled. I hope they will be restored for the sake of those who need to witness or participate in the process of “having fun again”.

In addition to the joy we feel when we sing, hum or whistle there are benefits for our chosen method of speech. Please note: perhaps we are talking about another myth that deals with what we “can’t do” and will eventually be dismissed as nonsense? How does this work for EL, ES and TEP? Let’s look at how singing works, and the necessary vowel duration that is used to change pitch while singing. My SLP used the directions from Warren Gardner’s (PhD), book entitled, “Laryngectomee Speech and Rehabilitation”, to have me play chords on my piano to help me try to move my pitch up and down the scale with: doe, rey, me, fah, sol, lah, tea, doe. Does the “Sound of Music” come to mind? The air and vibration in the esophagus can be manipulated up and down to change pitch with a tilt or turn of the head and neck; moving just like you spoke and sang pre-op.

There is a word for what I am trying to convey while considering the benefits of singing again. It’s diphthong. (Note: “Ph” becomes an “F” sound.}

From Webster’s Dictionary, “diph’thong, n. (LL. Diphhongus; Gr.diphthongos, a diphthong; di-,two, and phongos, voice, sound, from phthengesthai, to utter.) in phonetics, a complex sound made by gliding continuously from the position for one vowel to that for another within the same syllable; e.g., ou in house, oi in coil. In many languages, diphthongs can be interpreted and phonetically written as a vowel followed by a semi-vowel (glide).”

With all of that explanation, isn’t it easier to just sing what we know from memory? One of my former students was an Irish Tenor who sang for the U.S. Air Force. He practiced his ES singing “Blue Skies”, his favorite. The main reason for recommending songs, for which we already know the lyrics, and familiar rhymes, is that it’s less emotional than trying to express our thoughts in conversation. We can slip into memory, a sort of “auto-pilot” to some degree. Honestly, our muscles and brains remember how to do their job if we furnish a new sound source. You can begin with, “She sells seashells at the seashore”, or “Peter Piper picked a peck of pickling peppers”, and end up being able to sing-a-long with a few lines while listening to your favorite artist. Singing in the bathtub or shower counts as “practice”. The acoustics are wonderful!

How well I remember attending a John Denver concert with a friend and family as a gift a few months post-op. When he sang “Country Road”, I thought I couldn’t sing along with the audience using my EL in a crowd of thousands. Instead I sat there and sobbed. I didn’t give myself permission to participate. Instead I was focused on what I thought I couldn’t do anymore. How wrong was I? How needlessly hopeless? On the other hand it’s almost funny for me at this point to recall attending a performance of the Sweet Adelines. At the end we listened to their pitch to have new folks audition…especially the “disabled”. They dismissed my offer to try out.
Another assumption of a different sort about what we are capable of.

Whistling is pretty easy once you learn to direct the air in your mouth in and out with a bellows effect over your curled tongue and puckered lips. Remember? When you close your mouth you have two cheeks full of air to puff the out…use it with your pucker lips until you get a whistling sound. Yes, even EL and ES speakers can do this without the lung air TEP users have available to them. Can you whistle the “Rinso White” bird’s song?

Humming happens in the nasal area much like it did pre-op. This is something laryngectomees would do well to enhance for those “m” and “n” sounds. Hold the “m” or “n” sound as long as you can. Once I had an SLP use a measuring device so she could objectively document and measure my ability to make nasal “m” humming sounds of long duration. She seemed to be astonished that any laryngectomee could manage that much vibration in the nasal passages just as everyone uses them to hum. See, the nose is not so useless post laryngectomy after all.

It is so much fun to destroy the myths of what some choose to believe as fact about what we can no longer do as total laryngectomees. We have miles to go, and records to break. Won’t you join me in the fun?

Elizabeth Finchem
 

 

 

 


 

The Day (or Night) I Saw God


Following the biopsy of my vocal cords, I was diagnosed as having a T3 tumor. The experts decided on a combination of chemo therapy and radiation, hoping to save my larynx. I had my first course of chemo and went home to wait one week for the next one. A few days later, I was suddenly attacked by terrible pains in both my arms and legs. Within hours I was unable to move. An ambulance took me back to the hospital where, after hours of seemingly unbearable pain, I had surgery to remove a number of blood clots in my limbs.

Everything went downhill from there. I found myself isolated in a small room at the end of a corridor in the Oncology Ward. I couldn’t move nor could I eat or drink. I was fed through a tube and my body was inundated with a barrage of chemicals.

Later, I learned that they told my wife, who was there with me night and day, that she had better prepare herself for the worst. Nobody believed I would survive. But I did!

I know it was terrible, but when I try to get back and reconstruct the real sensations- I cannot- it just slips away. I do remember this, though; there was one moment when I simply wanted to die.

Was it because of the narcotics coursing through my veins, or due to my precarious physical state – I will never know; but I felt and envisioned crazy things, sometimes wonderful, sometimes frightening, beyond anything I had ever known before.

My body made no sense to me. I was sure it, or at least one of my main organs, was a component in a strange futuristic lab hurtling through space at warp speed. I was a combination of machine with human parts. There was a warning note of some kind on the wall of my room. I read it again and again and couldn't understand what it meant. I read it hundreds times and couldn't stop.

Then, I saw this creature. I was sure it was God.

A few days later when I came back to my senses, I started to draw and write in my note book. I tried to remember everything that I had felt and seen and make it tangible. I wrote down stories that had been created in my hazy brain while being "there".

I made drawings, influenced by a book I read before sinking into the mad trip that took me away to an unknown reality, and became a part of it. I planned the stage for an opera which I believe could be amazing, if only I were able to write it….

The drawings shown here are scanned from my hospital sketch book. Some of them might look like surrealist drawings, but they are not. They tell the true story of an extraordinary journey by a troubled mind.

 

Avraham Eilat

www.pixelpress.org/eilat

 

Dead end Carriages Human Cluster on Coconut Trees Searching for God
     
Some Aspects of the Human Body Towards a Grand Opera ll Towards a Grand Opera
     
TV Screen with Mouth and Questions Ultimate Drainage Whose Body Is It
 

 

 

 

 

 

It was my privilege to edit Rosalie’s columns ever since she started writing for Whispers on the Web in September 2006. Of course, she had a long and illustrious career as a journalist years before she ever wrote for us and it was easy to understand why; she just sparkled with wit and insight and her columns were ALWAYS a joy to read. I felt honored to be a part of them. If you go to the WotW index


http://webwhispers.org/news/WotWIndex.asp


you can find all the issues from 2003 to the present. Scroll down to September 2006 and you can read her debut entry “Standfirst”. She wrote 29 columns with us and each one is a gem and worth reading again.

I received the following note from her daughter, Victoria, which she asked that I share with you all to let everyone know just much the outpouring of support has meant to her and her family.

Dear Donna,

I have been truly overwhelmed by the kind emails from people who got to know my mother via WebWhispers.

She was a real character and a very special lady, and it seems this came across loud and clear on WebWhispers.

The kind emails, filled with love and humour, sent by your members had me in tears - for all the right reasons.

My mum had a lust for life and thirst for knowledge which made her never boring and always inspirational.

As a fellow journalist I would like to write something for your March or April issue, depending on when your deadline is.

Please tell me when I would have to write something for the next issue. If I feel it is too soon maybe I could write something for the next month and could then include details of her funeral. Knowing my mother I am sure it will not go ahead without some amusing incident!

Best wishes and I look forward to hearing from you.
Victoria


Victoria will, of course, have this space next month, something I bet Rosalie would just love.

For now, I am missing a very special person, whose gift for writing and friendship brightened our world. This song keeps going through my head:

“I’ve seen fire and I’ve seen rain,
I’ve seen sunny days that I thought would never end,
I’ve seen lonely times when I could not find a friend,
But I always thought that I’d see you again.”

Godspeed, my friend,

Donna McGary

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 47 new members who joined us during Feburary 2009:

 

Ricardo Arraez
Spring, TX

Paul J. Barbato
Brooklyn, NY

Linda Barrett - (Caregiver)
East Sussex, UK

     

John Barrett
East Sussex, UK

Blake Bihm - (Caregiver)
Prairieville, LA

Joseph Leroy Bihm
Prairieville, LA

     

Kathleen Bohannon
Elyia, OH

Gilbert De La Cruz
Trabuco Canyon, CA

Phyllis Davenport - (Caregiver)
La Grange, NC

     

Howard Davis
Devon, UK

Jeanette Eastham
Mason, MI

Lesley Edwards
Millville, NJ

     

Ava Chante de l'Esprit - (SLP)
Richmond, CA

Deborah Fenn
Millbrook, AL

Paul H. Flanagan
BC, Canada

     

Sammy Ford
La Grange, NC

Billy Fountain
Virginia Beach, VA

Dana M Gribble - (SLP)
Greenville, NC

     

Mike Hennessy
Baraboo, WI

Lowell E. Jamison
Grand Junction, CO

David Jennings
Valrico, FL

     

Mari L. Kelly
Decatur, GA

Andrea Krisiak - (Caregiver)
Saugus, MA

Ed Krisiak
Saugus, MA

     

Ronald D. Leek
Joplin, MO

Laurel Linton - (SLP)
Lake Forest, CA

Carolyn McInroy - (Caregiver)
Taylor, NE

     

Russell McInroy
Taylor, NE

Cheryl Meisel (Caregiver)
Erie, MI

A. Thomas Meltzer
Margate, NJ

     
Ray Mountain
Derbyshire, UK
Roy O'Neill
Derbyshire, UK
Elizabeth Nelson - (Caregiver)
Holly Hill, FL
     
Ronnie Nelson
Holly Hill, FL
Shirley Nicholos
Lafayette, CA
Robert Niemi
Yplsilanti, MI
     
Catherine Phillips
Baton Rouge, LA
John Ramsden
Kinnelon, NJ
Shannon Riva - (Caregiver)
Valrico, FL
     
Edward Roe
British Columbia, CAN
Daniel D. Romann
Anchorage, AK
Kym Sample - (Caregiver)
Palm Harbor, FL
     
Merrill Sample
Palm Harbor, FL
Beverly Smith - (Caregiver)
N. Augusta, SC
Richard Strauss
Elk Grove Village, IL
     
Sally Sykes
Bermuda, FL
Tom T. Weldon
Jacksonville Beach, FL
 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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